A call for more awareness about lupus

NASTACIA Woodhouse has lived a life of paradoxes. Receiving her lupus diagnosis at 18 years old, she recalls being a fragile child who was often sick, but despite this, she was always active, participating in tennis, badminton and the performing arts, activities which required a great deal of physical exertion.

Woodhouse mused to the Jamaica Observer about how much she loved the outdoors, sports, dance, and being alive. But her body is at odds with her passions and spirit, harbouring an immune system that attacks itself and inflicts endless bouts of pain.

During Lupus Awareness Month in October, Woodhouse, who has lived with the illness for the past 18 years, explained to the Observer that Jamaica lacks both awareness and resources for the condition. As such, she is calling on the country’s health authorities to make more of an effort to prioritise the disease as a matter of life and death.

According to the National Institutes of Health, part of the United States Department of Health and Human Services, systemic lupus erythematosus (SLE), more commonly known as lupus, occurs when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues. This attack causes inflammation, and in some cases permanent tissue damage, which can be widespread – affecting the skin, joints, heart, lung, kidneys, circulating blood cells, and brain.

Woodhouse explained that her journey to a diagnosis was frustrating, noting that most doctors she encountered could only point out her symptoms, but failed to recognise the overall illness.

“A good chunk of my childhood, I was ill. In high school that’s when I got a first diagnosis, which was a hormone disease called hypothyroid disease. Initially I was a small person. So my mom noticed my neck was getting very fat and it was strange to her because I wasn’t an eater. So we went to the doctor and that’s when I found out I had hypothyroidism,” she said.

According to the Mayo Clinic, hypothyroidism occurs when the thyroid gland doesn’t make enough hormones, often resulting in symptoms such as weight gain, swelling in the neck area that hosts the thyroid gland, and fatigue.

Woodhouse’s symptoms would develop into severe pains after physical activity, especially around her joints. This would then lead her to a doctor once more, this time, resulting in the diagnosis of arthritis, an illness mainly found in the elderly which affects joint mobility and results in immense pain.

But her symptoms did not end there. “I had some stuff coming up on my skin. It came on my face and on my back and it was like water bumps all over. I mean, you know anybody would say that they don’t want anything on their face and my face was full of them and I was so ugly. And on top of that I was feeling so much pain,” she said.

Her mother, after taking her to get several injections for her varied symptoms and noticing that the therapy did not work, took her to another medical practitioner, where Woodhouse was formally diagnosed with SLE.

“I had to stop dancing, which was my favourite past-time. I couldn’t play tennis anymore, and I honestly did love tennis. I can’t even go to the beach. I have to go to the beach at like 4:00 pm when it’s all dusk and you can smell the sea water. It [lupus] limits me a lot. I try, sometimes I do it, and then, you know, I end up suffering afterwards, but I feel good. I’m just trying to live my life,” she said.

Her issues with Jamaica’s health-care system were further frustrated when she recently had a scary run in with her illness that left her hospitalised, and impacted her heart. She described this as her worst fear, as she was admitted in hospital, battling for her life. She notes that years later, the treatment afforded for the disease was still “sub-par”.

“Lupus affecting my heart was always my biggest fear, and then last year, the worst fear came and I ended up at the University Hospital of the West Indies with chest pain. The doctors there that diagnose or are in the hospital say they know about the illness,” she said.

In Jamaica, the illness is not foreign, with statistics from the Council of Voluntary Social Services highlighting that the island, regrettably, has one of the highest rates of lupus in the world with an estimated 6,000 people living with the illness and young women being those most affected. The report further detailed that 80 per cent are diagnosed between the ages of 15 to 44, with 22 years as the average age to receive a diagnosis of lupus.

But for Woodhouse, living in Jamaica with lupus is an alienating experience, exacerbated by the expensive medication, and not much awareness.

“The illnesses that I have are not covered in Jamaica. For my hypothyroidism, that is not covered. I pay for that in full. Most of the pills that I do use the health card for, as I use it the one time it’s done. It’s the same thing if I’m going to take tests. The most recent test I took spent $47,000,” she said.

Living with lupus for nearly two decades, Woodhouse is sad that Jamaica’s awareness of the disease has not grown, even with the awareness month sharing space with Breast Cancer Awareness Month.

Woodhouse, now a teacher who is living life to the fullest in spite of her illness, shared that she hoped her experience can incite some necessary change.

“In October I didn’t see one thing promoting lupus awareness. So I would love it if the country could accept the illness as an illness, as a viable and real threat. Because if you go on without knowing what it is that you’re sick with, you die the fastest,” she said.

LUPUS FACTS

•Fact: Although lupus patients have an over-active immune system, they often struggle to fight common infections like respiratory or bowel infections.

•Fact: Young women, averaging 22 years old, are most affected, though the disease can occur in men and other age groups. It is most prevalent among people of African descent in the Caribbean and North America.

•Note: Young Caribbean women experiencing joint pain, skin rashes, or excess protein in their urine are encouraged to do a blood test promptly to detect lupus and prevent severe, permanent organ damage.

– Lupus Foundation of Jamaica